Blessed

I haven't posted any updates in a while because life is busy with two kids. So here is the quick and dirty version. We spent 40 days (a biblical time of trial followed by blessing) in the NICU. Keatley now has two "normal" lungs. I was able to see her chest x-ray yesterday and her lungs look the same. The doctors were right ;) , you can't tell which side the hernia was on. She is growing normally and is developmentally on target.

Jonathan is doing well too. What a trouper to have been displaced for 2 months. He rebounded quickly and is settling well.

He loves Keatley to death...almost literally.

I try to spend my days focusing on my blessings. It is so easy to get sucked into this world, our culture, and the depravity that we live amongst.

"Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you."

Phillipians 4: 4-9

Hallelujah!

I can't look at this face without praising the Lord.

Big Debut

Keatley getting a sponge bath

Keatley's clean fuzzy curls

I like this one because she is smiling.

Keatley hangin' out.

She is always so content when she is awake.

I hope that is just her temperament and not the methadone. :)

Day 22

I wanted to publish a post with all of the details about Keatley's journey. I started to write one, but it was just too much information and too overwhelming.

In the NICU, everyone is always talking about the roller coaster of good days and bad days. We have definitely experienced that. In Keatley's first 24 hours she went from doing surprisingly well to "coding" and being put on ECMO. She finally stabilized and then her heart wasn't functioning properly. The next morning her heart was totally normal. This was just within her first three days.

It has been three weeks now and there have been numerous ups and downs. If there is an organ to be examined and concerned about, Keatley has been through it. Some of the things we have been through have been concerning and others have been horrific. There have been a few moments when we thought we were going to lose our little girl. There have also been times when she has amazed everyone. A few days ago the respiratory therapist came to re-tape the ventilator tubes to her mouth and Keatley moved and pushed the tubes out. She literally extubated herself, she did so well without the ventilator, they progressed her to a cpap machine. The doctors hadn't planned to extubate her for three more days.

She is doing great now. She is on pressurized oxygen to keep her airway open (which they are slowly weaning.) She is on two sedatives and a PRN blood pressure medication (which they are slowly weaning.) She is taking breast milk through a feeding tube. She gets about 2 teaspoons every 3 hours (which they are slowly increasing.)

I am a different person than I was 3 weeks ago. God has revealed Himself to me in a way that I cannot fully explain. His body has loved and supported us. The medical technology and brilliance of the doctors that He orchestrates is astounding. The strength He has instilled in this little girl...amazing. He has moved mountains when we have called upon His name. His goodness and mercy are overwhelming. His miracles are tangible. We are so humbled and thankful to be on this journey.

We are not off of the roller coaster yet. Please continue to seek Him on our behalf.


I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you."

Post Surgery

Keatley's surgery went very well. The surgeon said that she had very little bleeding. He used a patch to repair her hernia, which he said is routine for large hernias. Her medical team has decided to make no more changes for today so her body can rest. Tomorrow they will begin to wean her from the ECMO. This will take a few days. Please pray that this goes smoothly. The longer she is on ECMO the greater the risk for blood clots and bleeding in her brain.
Jonathan seems to be doing a little better, he is a little more settled. My sister, brother-in-law, and mom have been spending a lot of time with him and I think he has seen almost all of Nashville. He also loves the playground and playroom at "Old MacDonald's House."
We are so thankful for the Lord's goodness and mercy. We are honored and humbled to be walking this path because we have seen His overwhelming goodness in His mercy for our daughter, as well as seeing His body work so well. We have been amazed by the number of people that have been going to the Lord on our behalf. We have not for a moment felt alone through this struggle. Thank you all so much for your love and encouragement. I know that He is pleased with the way His people have loved us.

On a lighter note: Yesterday one of the neonatologist mentioned to us that Keatley's gag reflex was not working. She was not overly concerned because of the amount of sedation that she was on, but it was something to note. Last night, one of the nurses was cleaning Keatley's mouth and putting some "chapstick" on her lips which was mint flavored. Kealtey started suckling her vent tube and then licked her lip to taste the chapstick. Obviously, she does have a gag reflex. The medical team was amused by our little diva that is already into lip gloss.

She is here!

Keatley arrived August 3, 2010 at 10:32am (central time.) She weighed 7lbs 12oz and measured 20 inches long. She did really well most of the day but started going downhill quickly during the night. Wednesday, early afternoon, she was put on ECMO. ECMO is a heart/lung bypass machine that is being used to help her lungs and heart rest. She has been stable since she was put on the ECMO. The doctors are tentatively planning on doing her surgery within the next few days.

Jay and I are definitely experiencing a roller coaster of emotions. This is not easy but we are praising the Lord because we know that we are walking through His plan. Please continue to pray for Keatley's healing, Jonathan's peace and that he would feel settled and secure, and peace and strength for Jay and me.

Thank you so much for your concern, encouragements, and prayers.

BTW- she is beautiful!

'nother update

I was discharged from the hospital this evening with orders to stay in Nashville, in case I go into labor again. The c-section is still scheduled for the 3rd.

We had another conversation with a specialist today. He gave us even more detailed information than we had before and even more statistics. He said treatment is pretty standard for babies with a diaphragmatic hernia and her survival is really dependent on her anatomy (which they cannot successfully predict in utero.)

We are weary. It is so draining to talk about the possibility of losing your baby. We trust God's will and are hopeful that our desires match His plan. This has been a hard day. I just want my baby to be ok.

Rolling with the punches

I am still stable and Keatley is still looking good too. This Thursday, my OB along with the pediatric surgeon, and neonatologist will be having a treatment team about Keatley and me. They are looking at the possibility of releasing me from the hospital if I can stay in Nashville and pushing back my c-section to the 1oth.

We have an excellent team of doctors and we plan to make work whatever they decide is best. This will (again) change everything logistically regarding money and places to stay. Jay would also be missing even more work before her birth, leaving less time to be here during her recovery. We are trusting the Lord to take care of the big stuff and the little stuff too. This is hard but we know that He is not surprised by any of this.

Thankful

I wanted to let you all know that Jay and I are so thankful for everyone's calls, emails, posts, monetary gifts, and gifts of service. We have been overwhelmed by the love of the Lord through the Body of Christ. I'm not responding to all of the messages now, mostly because I have an IV in my hand which makes it difficult to type, but know how thankful and appreciative we are, truly.

Vandy

We are already in Nashville. I started having contractions Thursday night and they continued through Friday morning. I spent Friday night at UT trying to stop the contractions. They continued through that night so they sent me to Vanderbilt Saturday. My contractions have finally stopped but we are staying here until Keatley is born to avoid complications. The plan is to keep her original due date as August 3, 2010 but she will be born sooner than that if I go into labor. There is an increased risk if she is born before 37 weeks which will be this Thursday. Right now we are stable and I am hoping it stays that way.

I will post updates when I can. Continue to pray...this sucks.

update...

We went to Vanderbilt today to meet with the neonatologist. It was emotionally exhausting. Forgive me if this doesn't make much sense. The neonatologist said that we would know within a couple of weeks of delivery if Keatley will survive. There is a 50/50 chance of her needing ECMO (bypass machine.) Recovery will be a minimum of 8 to 12 weeks. She will have developmental delays but at some point down the road be able to catch up with the help of various types of therapy.

It's hard to have no control. The only thing I can do is take my vitamins and be in Nashville when she is born. I don't want my 3-year-old to have to be displaced for months. I don't want him to have to be away from my husband and me more than usual.

I don't want my baby to be sick. I want her to come home. Today I am broken.

FYI c-section is August 3rd between 7:30 and 9:30 central time

Update

OK, so the baby definitely has a diaphragmatic hernia. We are going to Vanderbilt later this month to meet doctors. We still need prayers.

This is one roller coaster I wish I could get off of but I know that all things work together for good for those who love the Lord and are called according to his purpose.

Liver and Manna

Today I found out that I failed my blood glucose test (for gestational diabetes.) I go back tomorrow for a more in depth test. This in not a huge deal, just a pain. I've bigger fish to fry than diabetes, but any prayer sent up about that would be appreciated.

We also saw the high-risk OB today. Keatley is growing well, she is in the 56th percentile and all of her measurements look good. Her heart is still pushed to the side but looks to be developed appropriately and functioning properly. The doctor said he could see liver below the diaphragm and what looks like liver in her chest cavity as well. The blood flow to the "mass" in her chest looks like liver and he said that his best guess is a diaphragmatic hernia, which is what he thought before. He said he would be able to give us a definite diagnosis after the MRI on May 21st (it'll be a few days after that when we get the results.) Everything else seemed to be in the right place and he was able to see lung tissue which I was thrilled about because lung development is a big deal in babies with diaphragmatic hernias. Please pray with us that God will heal her body and that her lungs would develop well.

As a side note, my husband and I were going to be (more than) strapped for cash until his next paycheck. We received a surprise rebate check in the mail today from our 2007 taxes. Not a lot of money but the perfect amount to get us through until the next paycheck. Manna from heaven. This may not amaze some people but I know that this truly is manna from Jehovah-Jirah. I am amazed by Him. He is so good.

Liver and Manna... Is that an inappropriate joke? I just keep imagining Hannibal Lector and thinking of fava beans, yuck.

Keatley Hope

Last week my husband and I went for our 20 week ultrasound. We learned that we were having a girl, Keatley Hope, but we also learned that she had complications. The ultrasound technician could not see Keatley's heart clearly and my OB immediately sent us to a high-risk OB. The ultrasound technician and two specialists as well as a genetic counselor concluded that Keatley's heart was being pushed very far to her left side by her liver. They said that this was caused by either a herniated diaphragm or a chromosomal disorder. A herniated diaphragm means that she will be born at Vanderbilt and have surgery with an 80% chance of survival. A chromosomal disorder would be fatal. They did an amniocentesis and we waited 8 days to get the results.

We spent this week in prayer, constantly seeking the Lord. We have been surrounded by family and friends that have gone before the throne on our behalf. We are blessed beyond measure to be in a community of saints.

This morning the genetic counselor called and said that our baby girl does not have a chromosomal disorder. We are so thankful that the Lord's plan for Keatley is life. Please pray with us that He will begin to heal her while she is still being knit in my womb. We have peace that our little girl is going to be ok. We do not serve an 80% God. He is mighty.

Expect updates on Keatley Hope's progress.

"For you created Keatley's inmost being; you knit her together in her mother's womb. We praise you because she is fearfully and wonderfully made; your works are wonderful, I know that full well. Keatley's frame was not hidden from you when she was made in the secret place. When she was woven together in the depths of the earth, your eyes saw her unformed body. All the days ordained for Keatley were written in your book before one of them came to be." Psalm 139: 13-16

Hakuna Matata

So I've been super whiney and I'm trying to be more positive, so here are a few Yays.

I knew my husband was amazing but words cannot describe how wonderful he has been while I've been sick. He has been cleaning, taking care of our son, cooking, bringing me water and wet wash cloths while I puke, and running around like a crazy person to get me crackers, gatorade, popsicles, or whatever else strikes my fancy. (all with a sympathetic smile on his face)

My in-laws have been staying at my house on the days that my husband works to help take care of my son. That's right ladies, I am SO thankful for my mother-in-law. Let me write that again people, thankful for my mother-in-law.

So far my tachycardia is under control and I am not having any problems.

Boo #2 is healthy.

Boo #1 is doing really well adjusting to mommy being in bed all day. And he is no longer in the 5th-10th percentile for growth. He is now in the 20th! Yay!

I had a good evening tonight, maybe this is the beginning of the end.

Day 76

Finally beginning to have more good days. This is the beginning of the end. Please, forgive my whining.

Day 70

Will it ever end...

Day 66

I didn't make it through Day 65 without throwing up. Today has been a little better. Still nauseated. It helps to look up pictures on the internet of in utero babies that are the same age as my "nub". It reminds me why I decided to do this again...however, the sickness reminds me of why this will be the last time!

Day 65

Today has been a bad day. The nausea just keeps getting worse, it is starting to wear me down. It's like there is something in my body that is sucking the life out of me, imagine that. I know it will get better. The waiting is hard, I'm just in survival mode now.

My family and my in-laws stay with us on the days that my husband works because I can't cook for my son or change diapers. I rarely play with him and it is so hard.

I'm clinging to what I know is true: I know that all of this is worth it for the miracle that is to come.

Sticks and Stones...hmph!

Why do we remember the mean things people said when we were in school and why does it still hurt our feelings?